July 24, 2016

It is a bright sunny day and not too hot – after a thunder and lightning storm the night before.  Since this is supposed to be at least a little about Parkinson’s and not a weather report, I had better get down to business.

At present and recently there have been only two changes I my symptoms.  The first, and I think I have mentioned it before, is the extreme tiredness I get at the end of the day.  It is frequently a factor if I have been working hard during the day, but sometimes even when I haven’t been so busy.  I feel so exhausted that I can hardly put one foot ahead of the other.  Lying down for an hour or so seems to revitalize me and I can feel remarkably well after a short rest.  The second is equally interesting from a different perspective.  One of my first and obvious symptoms of PD was that my right had shook.  Now it hardly ever does.  I am surprised that the shaking has virtually stopped. 

Another, but unrelated, situation has happened in connection with my prostate cancer.  I have been attending the Cancer Clinic in Halifax for years and been examined by several doctors.  Last week, as my PSA score has remained very low, the Doctor in charge dismissed me from the clinic.  He will take me back if or when needed.  I still have two cancer doctors that are not associated with the clinic, so I have not been left out in the cold.

The deck is finally done.  The last item was a load of dirt to fill in behind the moved stone wall and very fortunately I had help with that.  My grandson Steven, his wife Tanya and eleven week old Marshall are visiting for a few days and both were more than willing to help move the top soil.  We also started to clean up a rough corner at the back of the yard and will plant grass seed there sometime soon.

A few more guests will be coming.  Susanne and Jeff have bought a house            not too far away in Dartmouth and Susanne will be coming for a look at work that needs to be done before Isabelle (and friend) can move in for university in September.  Howard and his family will arrive in August for a week, but will be staying at Heather’s place.  It has been and will continue to be an interesting summer.

July 15, 2016

July 15, 2016

My blog-site has been neglected for too long.  There are two reasons/excuses.  First, nothing very dramatic has happened to my health and second I have changed from Windows 7 to 10 on the computer and things aren’t so easy to find.  I will try to be more regular (that sounds like a bathroom expression).

There has been one sort of good news.  Dr. Patil discharged me from the Cancer Clinic at the hospital.  This simply means that my prostate cancer is stable, not that it is cured.  My PSA score is between 2.5 and 3.5 and is staying there, at least for the present.  He said that if I need him, just call.  On the other hand, I still have two other cancer doctors that I see every six months, but they are not part of the main cancer clinic.

Yesterday I saw my Parkinson’s doctor and he seemed satisfied with my progress - in not going down-hill faster, I suppose.  When I visit him we do a series of little physical tests which illustrate how fast I am degenerating – or not – and I seem to have kept up my speed and dexterity for the moment.  At least he didn’t order any change in my several pills. 

For the past several weeks I have been working on rebuilding and extending our deck at the back of the house – with the view down the harbour.  It was strange and pleasant to find that by adding only about three and a half feet to he depth, the place seems twice as large.  I put in the cement bases, the vertical support posts, the support beam and the joists.  Bruce (and Heather) came from Sarnia for three days and between us we removed the old decking and installed the new and also constructed the three foot high railing.  He is a very handy helper, making all the necessary fittings where decking had to be cut to fit around posts.  I have been finishing up the final little bits and rebuilding the rock wall that kept a garden in place.  It was disturbed by the building going on around it.

Mainly, when I am feeling good, it is almost like I had nothing wrong with me.  Other times, not too frequent, I still have my feet seeming stuck to the ground and am shuffling around the house hanging on to furniture, door frames and walls.  The only major change has been that after a big day of construction, I am literally exhausted.  I can hardly lift my feet to get anywhere.  Usually, if I lie down for a half-hour to an hour, I get over it and can feel pretty good, but the excessive tiredness is hard to deal with.

Today, Friday, I did a limited work-out at the Findlay Centre and had a coffee at Tim Hortons with Heather after – our usual operation.

Now I have a small project to do making a door or some sort of a closing at the open end of the new section under the deck.  I really enjoy having these projects and am not very happy when I have to lie down and rest to compensate.

I will try and be more regular in my reporting.

March 18

It hardly seems worth blogging when days are regular or normal for me.  The only unpleasant reoccurrence is that I frequently, toward the end of the day, get very tired and a little depressed.  My pills have been taken on time and I usually have been working at something but I shouldn’t feel particularly tired.  I guess that is a part of Parkinson’s.

Other things have been interesting.  Jan and I went to the annual Parkinson’s meeting and day of information.  Rather than each speaker talking to the whole crowd, they come to each table (for 10) and take thirty minutes to talk about their activity and answer questions – quite informal.  If you are in the “P” category, you should consider going.  I believe that similar events are held across the country.

For me personally: my “Dancing with Death” story was published in the spring publication of the Dance Nova Scotia group, that made me feel good.  If you have been watching the news recently there has been a continuing saga about the deplorable conditions in Attawapiskat on James Bay.  It is a community I have visited several times when I worked for Indian Affairs.  It was not a very prosperous place when I was there fifty years ago and it now seems much worse off.  I wrote an article with my views and sent it to the Globe & Mail.  It was much too long for a “Letter to the Editor” so my hopes aren’t too high about it being printed.

There are two other carpenter type projects I’m working on.  I think I mentioned previously that I am making a mahogany box/urn for my cremation ashes.  It is progressing – slowly.  A friend I told about it suggested I should have made a practice one out of pine – much cheaper.  The other carpenter job is replacing some rotten wood in our back deck.  This is going slowly as well, but mainly because of all the rain and cold winds.  A friend came for a few hours today and we got the main support post installed.

Tomorrow my granddaughter arrives from Australia for a few days.  We are looking forward to that.  Even on bad days with Parkinson’s there are still a lot of good things to look forward to.  Spring is coming, the little “book exchange” is going well and Tea & Tango is starting another six week dancing session.  Stand back!

March 23/16

My Parkinson’s has been acting strangely again, at least strangely for me.  I have been taking my pills on time, no part of my body feels in any way unwell, but I have still experienced a loss of balance and poor walking.  For example, I take my first pill of the day at 7:00 am, I go back to bed for about an hour – for the pills to work – then get up, have breakfast and go, to the Community Centre for a work-out.  In the weight-room I do all the regular stuff; treadmill, stationary bicycle, stretches on the mat and then some weights with no problem.  My reward to all this activity is usually a stop at Tim Hortons for a coffee and a plain donut (I’m trying to gain a bit of weight.) and I am still feeling ok.

At 11:00 am I have my second set of pills and still feel well.  Today I worked for a short while on a project in the workshop and suddenly felt a severe loss of balance.  I left the room and went upstairs hanging on to the walls and door frames.  Jan escorted me up to our spare bedroom where I lay down and rested for a half hour or so.  When I got up I felt normal again and am continuing on with my day.

My suspicion is that at least sometimes going four hours between pills is a bit too long.  The new pills take time to start working and during this period my body reverts back to some Parkinson’s symptoms.  It is also possible when the pill period comes not too long after a meal (i.e. 7:00 pm) that protein consumed also slows down the pill’s usefulness.  I’ll discuss this with my doctor at my next appointment in a few weeks.  

I believe that I have mentioned my reading several books concerning “end of life” situations and problems with the loss of mental ability.  At 87, I don’t have forever to get things done, so I have paid for a burial agreement, which for me will be a cremation.  One of the items in the list of services and prices is the cost of the urn for the ashes.  Two friends do pottery and ceramics and my first thought was to see if either of them would like to make an urn.  My second thought, as I like and need projects to work on, was why not make a mahogany one myself.  I did some research and visited a funeral home to see wooden urns and their size and I have started making one in the workshop.  It is just a box, but I am trying to make it very carefully.  Is all of this morbid or economical or just cheap?

 

Mar.24:  Usually mornings are good, but this morning I got up and shuffled and stumbled around for most of an hour.  Fortunately things straightened out as I had a dental appointment at 10:00 this morning.  Late this afternoon I had another loss of balance – and lay down again for half an hour.  What with old age, Parkinson’s and having all my teeth removed over the last few months plus getting used to trying to eat with false teeth I don’t always feel very joyous.  (Avoid any or all of the above if possible.) 

March 11/16

 

Sorry for this long gap in communications, but nothing very special has been going on.  That in itself is probably the best sort of news.  In the main I feel well, that is, none of my parts are giving me much of a problem.  My only real difficulty has been, in spite of taking pills on time, several evenings over the past few weeks I have felt very restless internally.  It is hard to describe; I’m back shuffling, I don’t want to sit still, there is nothing I want to do and my insides seem to vibrate.  I know that’s not what is happening, but it feels that way.  And, I feel depressed and exhausted.  In doing a bit of research and talking to my pharmacist there is some suggestion that it is extra protein reacting with my Levocarbidopa drugs and interrupting or delaying their usefulness.  I am going to test it by having a porridge day.  I have porridge every morning and it has never given me any problems.  My test will be to eat it (with fruit if we have it) for all three meals and hopefully have no negative feelings.  I will report back.

 

My best days are when both my mind and body are busy.  There are a few activities that fill the “busy” category.  As I have mentioned in the past, I work-out at our local community centre three times a week.  The building was an old school and had some unused long book shelves in the main hall.  The management agreed and we now have a book exchange which gives me a small amount of work putting donated books in some order on the shelves.  We have had hundreds of donations.  There are no records kept and the motto is:  “Bring one, take one, read one” – in any order.  There are people using the building from day-care to Seniors, and it seems to be used by many members.

 

Another interest is writing, and I belong to a small group which meets once a month.  We draw a topic each month and produce a short story for the next gathering.  The “topic” word can be interpreted as you wish.  One of the earliest stories on this blog, “Dancing with Death” (a Parkinson’s story) was written last August.

 

Reading is also a big interest, although my speed has slowed.  Because of Parkinson’s and my other ailments I have been doing some reading topics concerning the end of life.  My most recent in this genre is “Being Mortal” by Atul Gawande, a doctor.  I recommend it.  My theory is, that the more you know about a topic, the easier it will be to deal with.  As an offshoot of all of this I have pre-paid for my eventual cremation, and as an offshoot of that I am making my own cremation “urn” out of mahogany.  All this took a bit of research and gave me another project to work on.  I’m not rushing this last part.

 

Some time ago I said that we had purchased a pill timer which also had compartments for pills.  If I remember correctly, I believe I also said that it had died (better words – “quit working”).  We ordered a different one from Amazon in the same price range – under $30.00.  It is working well and I even understand how to set it for my pill times.  The first one was beyond my comprehension.

 

There, did that make up for all the days I missed – or did anyone notice?

Feb. 2, 2016

 

The blog has been neglected which usually means that I am feeling quite good or the opposite.  Either end of the spectrum inspires me.  Except for the times, usually in the morning, when I shuffle along or do one inch strides, nothing really bad has happened.   Sunday evening was the exception.  The Parkinson’s group and their partners held a Tea & Tango and it went very well.  We all danced for an hour or so and then had tea, coffee and treats and a visit.  I was fine all day, but by supper time I was exhausted and went to bed very early.  Physically I’m in pretty good shape and dancing the tango isn’t hard work, but something absolutely made me exhausted.  Felt better in the morning, but being in bed that long had made my leg muscles tighter than usual.  My balance was ok, but it took a bit of walking around the house for my muscles to loosen up.

 

Some time ago I mentioned that I had brought one element of the bathroom to the bedroom.  For years I have stumbled and shuffled to the toilet during the night.  My balance and foot-work are never very good at that time of night and although I have had small crashes into walls and door frames I haven’t had a bad fall on these trips.  With a small plastic pot and foam rubber kneeling pad I can just slip over the side of the bed and “Bingo” there I am.  The bed is on one side of me so I have good support, aiming is easy and except for the sound of rain on the roof, it has been a perfect solution.  (Have you tried it?)

 

Previously I mentioned that the little timer we got through Amazon died after only a couple of months.  A different one has been ordered and I will report on it after it gets into use.  The pill timer is a good idea as without mine I frequently forget or get busy and distracted.  Better luck this time.

 

Jan. 10

As Al Jolson sang, “I been away from you a long time, I never thought I’d miss you so,….”  How ever, you say or sing it, I have neglected my blog for far too long.  In part it has been the business of the Christmas holidays and in part, there haven’t been any health crises in my life.

 

There have been a few things to comment on.  For some reason, in spite of being on time with my several pills, several evenings were spoiled because by walking deteriorated, - back to shuffling and using my cane a lot.  I can’t account for it, but it often coincided with visitors, which made me feel old and decrepit – which is partly true.

 

There has been one more symptom that I have to add to all the rest:  “Restless leg syndrome.”  I won’t see my neurologist for another month or so to confirm my diagnosis, but my legs frequently are acting differently than in the past.  Sitting in a chair at the table I will realize that my feet, or one of them, is completely up on its toes.  In a more comfortable chair the “on the toes” thing does happen, but often my legs are crossed and are twitching slowly.  It isn’t particularly uncomfortable, but it seems weird.  Looking it up, I found several sites on Parkinson’s talked about “restless leg syndrome.”  I’ll confirm after I have seen the doctor.

Some time ago I recommended a pill timer we bought through Amazon.  It was exactly what I needed, but after a few weeks it went strange.  It would keep the time, but in no relation to the pill times – and you need both to coordinate to be useful.

Other than the inconveniences mentioned above, my health has been quite good but I am frequently feeling more tired than I should be.